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Families of Young Children with Developmental Disabilities: a Model of the Parenting Process

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Families of Young Children with Developmental Disabilities: a Model of the Parenting Process University of Tennessee, Knoxville TRACE: Tennessee Research and Creative Exchange Masters Theses Graduate School 12-2012 Families of Young Children with Developmental Disabilities: A Model of the Parenting Process Rhett Maurice Billen [email protected] Follow this and additional works at: https://trace.tennessee.edu/utk_gradthes Part of the Social and Behavioral Sciences Commons Recommended Citation Billen, Rhett Maurice, "Families of Young Children with Developmental Disabilities: A Model of the Parenting Process. " Master's Thesis, University of Tennessee, 2012. https://trace.tennessee.edu/utk_gradthes/1362 This Thesis is brought to you for free and open access by the Graduate School at TRACE: Tennessee Research and Creative Exchange. It has been accepted for inclusion in Masters Theses by an authorized administrator of TRACE: Tennessee Research and Creative Exchange. For more information, please contact [email protected]. To the Graduate Council: I am submitting herewith a thesis written by Rhett Maurice Billen entitled "Families of Young Children with Developmental Disabilities: A Model of the Parenting Process." I have examined the final electronic copy of this thesis for form and content and recommend that it be accepted in partial fulfillment of the equirr ements for the degree of Master of Science, with a major in Child and Family Studies. Vey M. Nordquist, Major Professor We have read this thesis and recommend its acceptance: John G. Orme, Brian K. Barber Accepted for the Council: Carolyn R. Hodges Vice Provost and Dean of the Graduate School (Original signatures are on file with official studentecor r ds.) Families of Young Children with Developmental Disabilities: A Model of the Parenting Process A Thesis Presented for the Master of Science Degree The University of Tennessee, Knoxville Rhett Maurice Billen December 2012 ii Acknowledgements I would first like to acknowledge the parents who participated in this study. I offer my sincere gratitude for their help and their willingness to give of their time and to share their experiences. I also wish to thank my thesis committee: Drs. Vey Nordquist, Brian Barber, and John Orme. You have each been immensely supportive and encouraging to me throughout this experience, and for that I am grateful. I would also like to acknowledge the assistance given by those who helped recruit participants for this study: Agnes Fox, Sara Gilbert, Robin Hamrick, Lynne Harmon, Susie McCamy, and Pam Potocik. This project would not have been possible without their involvement and support. I offer my genuine appreciation to Juli Sams for being willing to include me as a co-principal investigator on this project. She has been a vital mentor to me in guiding me through the research process. In addition, Jessica Lampley was instrumental in providing assistance with transcription, for which I offer my thanks. I would also like to express my gratitude to the entire department of Child and Family Studies at the University of Tennessee, Knoxville. I am grateful that the faculty, staff, and graduate students have all been so warm and encouraging. Finally, I would like to thank the members of my family for their support and encouragement. I am grateful for their prayers and their constant willingness to help me in any way possible. And my wife, Monica, I am grateful for her love, her kindness, her support, her patience, her example, and her sense of humor. I could not have done this without her. iii Abstract Parents of children with developmental disabilities (DD) experience a wide variety of conditions and influences that may affect the parenting process. Researchers have long recognized that child characteristics in particular influence parental behaviors and have demonstrated the reciprocal nature of the parent-child relationship. The main purpose of this study was to identify some of the primary mechanisms by which young children with DD influence their parents’ behaviors. 10 couples (10 mothers, 10 fathers) raising young (birth to five years old) children with DD (e.g., hearing loss, autism, hypothyroidism) participated in the study. Following grounded theory methods, parents were interviewed using face-to-face audio-recorded semi- structured interviews that focused on their parenting behaviors and their experiences raising a child with DD. Parents described multiple categories related to the parenting process that highlighted the bidirectional influences between parents and children. The central categories that emerged from the analysis in relation to the overall parenting process were: life history (family of origin influences, other life experiences), child effects (characteristics of the disability, other child characteristics), formal social support (empowerment, homework, differentiating services), informal social support (family support, partner support, other parents), worry and stress (child’s future, child’s safety and wellbeing), and parenting behaviors (seeking normalcy, regulation, support). These categories are proposed to interrelate in a model illustrating the process by which parents and children with DD reciprocally influence one another. Limitations of this study are identified and implications of this model for future research and practice are discussed. iv Table of Contents Chapter 1 Introduction .............................................................................................................................. 1 Parent-Child Relationships ................................................................................................................... 2 Parenting Children with Developmental Disabilities ......................................................................... 3 Chapter 2 Literature Review .................................................................................................................... 8 Parenting Typically Developing Children ............................................................................................ 8 Parenting typologies. ......................................................................................................................... 9 Parenting dimensions. ..................................................................................................................... 15 Summary of illustrative review. ...................................................................................................... 19 Child Effects .......................................................................................................................................... 20 Parenting Young Children with Developmental Disabilities ........................................................... 24 Systematic literature review. ........................................................................................................... 24 Parent self-report studies. ............................................................................................................... 25 Table 1. .............................................................................................................................................. 25 Observational studies. ..................................................................................................................... 34 Interview studies. .............................................................................................................................. 37 Mixed methods studies. ................................................................................................................... 40 Synthesis of findings from research on parenting young children with DD. ............................ 42 Summary of systematic review. ..................................................................................................... 45 Chapter 3 Methods ................................................................................................................................. 48 Research Design .................................................................................................................................. 48 Qualitative study. .............................................................................................................................. 48 Ontological position. ......................................................................................................................... 48 Grounded theory method. ............................................................................................................... 49 Participants ............................................................................................................................................ 50 Procedures ............................................................................................................................................ 51 Recruitment. ...................................................................................................................................... 51 Interviews........................................................................................................................................... 51 Compensation. .................................................................................................................................. 55 Data Analysis ........................................................................................................................................ 55 Qualitative data software................................................................................................................
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